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Wednesday, July 22, 2009

Appointment Update

We met with Dr. Horne, our Pediatric Cardiologist this afternoon. My prayer list for the appointment was as follows:

Complete healing for our boy!

If not complete healing, then at least some kind of an improvement in his diagnosis.

If not complete healing nor an improvement, then at least no new "bad" news or any additional issues to be discovered.

I am pleased and so incredibly blessed to say that although God did not choose my Option 1 (and that's okay by me!), He did answer my other two prayers! We didn't spend a lot of time on the ultrasound, and there really wasn't anything significantly different than what we discussed at our previous appointment last month, but he did say something I found to be incredibly encouraging. He said something along the lines of Chase having sort of "a ventricle and a half," which basically sounded to me like his left ventricle isn't so small that it will be completely unable to do what it was intended to do. This doesn't change the outlook on the 3 surgeries we'll need, but it did make me feel encouraged. And I was also happy to hear that Chase's aorta isn't the smallest he's seen. In fact, he's had some babies without heart conditions that are born with smaller aorta's than Chase's is right now at just 25 weeks of development! I'm so very pleased that Dr. Horne didn't find any other unusual issues or problems. It appears we have a relatively "textbook case" of HLHS, which I'm actually thankful for! Our situation could be MUCH worse!

I was also encouraged by a conversation I had with Dr. Horne after hubs had to leave the room to take care of an extremely whiny LO. I mentioned an underlying fear in my mind about how I try not to think about the long-term prognosis for our son. I asked that if Chase made it successfully through all 3 surgeries (God willing), is it a guarantee that he'd require a heart transplant as a teenager or young adult? He indicated that was NOT the case at all. His oldest HLHS patients are only around 15, simply because these surgical treatments have not been happening for much more than 15 years. But he doesn't see any indication in his older patients that a heart transplant would be necessary. In fact, he further calmed my worries when he mentioned that he has non-HLHS patients who have had the 2nd and 3rd surgeries (basically the Fontan procedure) for a different type of heart problem, and those patients are in their 40s. So God definitely used this appointment to set my mind at ease about the one looming concern in my heart. He is SO GOOD!

We are so grateful and blessed to have the wonderful support and prayers of our family and friends. It is so evident that people are praying and that God is giving us the strength we need to handle this situation. I keep reminding myself of something my dear Uncle Darryl shared with me when I spoke with him the day after we received Chase's diagnosis. He told me that God chose us. He selected us to be our son's parents because He trusts us and knows we would be the best parents possible for this sweet child. I couldn't agree more. With God in control, we are confident we can make it through whatever comes our way!

3 comments:

Kathy-I am so glad your appointment went well with Dr. Horne. He is a kind man. We too had a ventricle and a half. Noah's left was there, but not big enough to function on its own. Your fears were my fears. I am glad you are at ease with Dr. Horne's comments. And I definitely came to terms with "why is this happening to my child" by what your Uncle said. To suffer is to be closer to God. I was chosen by Him because he knew I could care for Noah. That finally sunk in after the shock period while being at MUSC right after birth. Anyway, thanks for all your posts. I've been wanting to listen to the video link, but its too noisy around here and hard for me to hear. Maybe I can find a quiet room one day when things calm down. We are getting there.